Disabled, immunocompromised and those at high-risk for complications from COVID-19 have felt an unshakeable weight over the past 18 months. Watching our government fail, loudly and repeatedly concluding that we weren’t worth protecting has been a heartbreaking awakening. Society’s ableism has never been more clear to me than seeing it be explicitly debated whether people like me deserve to live — and that this became normalized. Saving lives became political in the name of individual freedom.
Starting back in 2018 when Trump disbanded the pandemic response team, denial would prove deadly. It was just going to go away, and cases were going to be “very mild” according to the former president as the death toll rose. Even the most seemingly progressive among us clung to the ableist belief that it only affects those with underlying conditions, so healthy people don’t need to worry. Now with an even deadlier dominant strain causing another wave, there seems to be no compassion in sight.
But May 2021 was a time when I thought recovery might be possible. We were so close! I had recently passed 2 weeks of being fully vaccinated. I was about to graduate college. Life was good. Just when I started feeling cautiously optimistic that we might see the other side of this physical and emotional attack on marginalized lives, the Center for Disease Control and Prevention issued new guidelines stating that fully vaccinated individuals can return to normal activities, without wearing a face mask or social distancing. While in an attempt to encourage people to get vaccinated, the problem lies in the vaccination rates, which continued to drop in the months to come.
In the US so far around 55% of those eligible are fully vaccinated. In the red state of Kansas, that number falls below the national rate at approximately 50% and this rate has slowed dramatically since becoming available to everyone. Polls done after the new CDC guidelines suggest it is not encouraging people to get the vaccine. This same group is also less likely to wear masks than those who are vaccinated. People who are unvaccinated in protest never took the pandemic seriously and the new guidance served as an excuse for the vaccinated to act like that’s the end of it.
Regardless of how much everyone wants to get back to “normal,” it was too early for the CDC to recommend a loosening of precautions. We cannot pretend the pandemic is over now. If our safety was really a priority, precautions would remain aggressive until a higher portion of the population was vaccinated.
“I think it’s always better to be more cautious and on the safe side than being overly quick to open,” said Dr. Rick Moberly, a physician in Portland, Oregon. He says that while the vaccine is widely available, it was still premature of the CDC to make this recommendation, especially due to the recent drop in demand. “Why not wait until we have more people vaccinated? Why not wait until we can have a vaccine that’s available to children? Why not wait until we know more information about the current variants that are coming out.”
“If your entire population is potentially spreading this infectious disease, then the only way to get behind it is to slow the spread and vaccinate as many people as possible. So the more aggressive we can be, the less infections will happen, as well as less people will die and the more time we’ll get to vaccinate people,” Moberly said.
He also adds that there is clear evidence of breakthrough cases. This means that the question is not only whether or not you are protected from COVID, but it’s also if you will spread it to someone who’s immunocompromised, unvaccinated, partially vaccinated, or to children who cannot yet get the vaccine. “That to me alone should be the deciding factor that we should still be masking indoors for sure,” said Moberly.
The vaccine is helping people like me feel safer leaving the house. But how can I trust those who wouldn’t take the precautions needed to curb the spread in the first place to get vaccinated now? How are we supposed to convince an ableist world to show basic empathy for others? The fact that I cannot answer these questions is why I’m not taking off my mask for the foreseeable future.
Having to rely on public health decisions made by governments that don’t work for us has always proved disappointing. This was especially clear in the inequitable distribution of resources needed to survive the pandemic. I was fortunate enough to be in a position where I wasn’t completely desperate, but definitely glad when I finished my doses of Pfizer this past April. But that didn’t come without a reminder of just how much disabled people are put last.
During the vaccine rollout, many states (including mine) left many disabilities that make people at high risk in the last vaccination phase. I have a weakened respiratory system due to spinal muscular atrophy. It took a huge effort to keep me alive from starting life on a ventilator, to countless colds-turned-pneumonias. I’d really prefer not to find out what COVID would do to me.
Yet according to my county’s guidelines, I was only able to get the vaccine one phase ahead of everyone else because I was on an immuno-suppressing medication at the time for my colitis. Even then, I was told I may have less efficacy due said medication (it was better than not getting it, however). My main caregiver technically wasn’t supposed to get one when I did because she happens to be my mom. Thankfully, neither of us got turned away.
The vaccine must be accessible to those who need it the most, like people who had to postpone medical care because it was too risky to go unvaccinated. Or those who faced communication barriers and other issues due to the need for masks. All this only to be last in line to get the solution to these problems. This will only continue to worsen as cases climb back to where they were at the peak last winter and hospitals fill up across the country.
Because we failed to flatten the curve, care rationing is a grim reality on the horizon. This means that, if forced to adopt crisis standards of care, I might not get an ICU bed if I got COVID and was deemed “less likely to survive,” let alone any other medical emergency. This is where my mind goes when someone is baffled that my family members take so many precautions, downplaying the risks we face. While we can breathe a sigh of relief to be vaccinated, the collective trauma from the past year and a half isn’t going to go away.
Having how much people want us dead regularly shoved in my face hasn’t exactly been easy on my mental state.
I was recently asked why I was wearing a mask at an outdoor public event. I struggled with the answer at the time. I was fully vaccinated, but still knew I didn’t want to take any chances with my health, as there was some risk for me to go out to a somewhat crowded event in the first place. It was my moral and emotional rationale I was having trouble putting into words.
Now I know: I wear a mask because I know what it feels like when people wouldn’t do the same for me.
It’s hard to forget just months ago when people weren’t wearing masks, it was most likely in protest. After experiencing this mass carelessness and ableist rhetoric in desperate attempts to preserve the right to risk the safety of others, it’s hard to believe they are suddenly going to do the right thing and get vaccinated. A wave of anti-vaxxers emerged as theories of a government controlled hoax or 5G in the vaccine continued, touting “my body, my choice,” and that at-risk people should “just stay in a bubble,” while they live in reckless denial. Meanwhile I’m at home watching the news cut from the latest anti-mask/anti-vax protest to the rising COVID cases every day. Driven by an uncontrolled spread of misinformation, many questioned its level of testing, as Pfizer now has full FDA approval.
Lawmakers undermined all logical public health advice to preserve party politics. In Kansas, our majority Republican legislature enacted a law that effectively limits any power our Democratic governor had to implement restrictions through executive order — before all were eligible to get the vaccine. This left the decision to implement things like mask mandates and remote learning up to countries and individual school districts. Most states that still had mask mandates once the CDC’s guidance was released, dropped them soon after. This year, many schools began without mask mandates, and without options for high-risk students, and schools are already feeling the consequences. Saving lives shouldn’t be a political issue.
Republicans aren’t alone, however. President Biden campaigned on putting an end to the pandemic, yet strategies like a national mask mandate remain untried.
In late June, the World Health Organization urged continued mask wearing for those who are fully vaccinated due to the rapid spread of the delta variant, which is 50% more transmissible than the previous strain. Because no single layer of protection is perfect (i.e. vaccines), the more safety precautions in place like masks, social distancing, etc., the less the likelihood of spreading, and mutating into new variants. I’m happy to wear a mask (or 2) if it means an extra layer of protection. Heck, maybe I’ll wear one forever. I don’t care if I’m the only one, though I hope I’m not. And I’ll gladly get any booster shots that are recommended. Call me a sheep, but wearing a mask, getting vaccinated and maintaining distance shows you care about your community.
So my question is, who were you during a pandemic, when your community needed you the most?
I hope everyone who is physically able to (noting that there are valid medical reasons why some may not be able) gets the vaccine. It’s up to us to do it for those who can’t, like people who are immunocompromised and might have a lower immune response to it. The vaccines are proven safe and effective against severe illness and death from known variants— especially if we all get them. Wearing a mask adds another layer of protection, easily saving lives. But it’s hard to have hope for the same people who left you for dead. I wish the chance of putting lives like mine at risk was enough to do the right thing. If we ever want to go back to normal,” we need the mindset to realize the potential consequences of our actions. As I begin going out into the world again, I want to do everything I can to show the respect I wish more people had for disabled lives. But right now, ableism is winning.
